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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Cancer Support Thread 97: support for those diagnosed and going through treatment

1000 replies

LiliJilliBobs · 11/06/2025 05:32

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

OP posts:
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16
Nonamelass · 05/12/2025 20:46

Sbmpp · 05/12/2025 19:53

@Nonamelass Thank you!! I did it!!!

Yay!!! 😊😊

cantbelieveIamhere · 06/12/2025 10:10

@ForestFlowerFairy wow I am sorry its all on you to deal with this. Of course dogs live in the moment so shes forgotten all about how shes behaved.
What a lovely thing to do to write down all her good points it will help them to find the right person for her.
Be kind to yourself, this is a lot to deal with as well as bloody cancer.
I send you lots of strength via my steroids today and good wishes and hope your heart heals quickly.

cantbelieveIamhere · 06/12/2025 10:23

@ventress I had no idea you were surviving on cake and chocolate. It just doesnt help you try to be healthy when you cant taste anything does it?
I agree about the tiredness, or just the slump that you feel even after a good nights sleep.

@cannaecookrisotto good for you having a rummage for your lump I am too scared to check mine. Good luck for your results too.

I am high on steroids today after chemo yesterday. All going swimmingly well
pre meds, new akeynso sickness med which lasts five days and then phesgo injection - only 5 mins and not too bad. Then five minutes into chemo and I feel my face going really hot very very hot and I have cold mits on, cold cap on and cold socks on. I ask my husband am I red? He calls for nurse, within seconds she has pushed red emergency button and I am surrounded by four nurses, one a senior nurse and two doctors from the blood cancer unit next door. All asking me if I can breathe. Luckily I could, and they stopped chemo, put antihistimines in and more steroids and then it became a very long day.
Had to wait half hour but I still had mits, socks on as I didnt know if they would restart sooner, so then restarted but very low amount and very slowly. By this time I have frostbite on my right hand and mits and socks come off as they are now melting.
Meanwhile chemo continues and I end up cold capping my head for four and a half hours!!!!
Nurse said to me afterwards that she had pre prepped antidotes as docestaxal rounds one and two can be problematic, so wise nurse helped enormously and I was impressed at the speed of response.
Senior nurse said that on the scale of reactions to chemo this was a lower one so I dread to think how bad it could be.

Anyway moral of tale is they do look after you! I am fine and hopefully all the drama has happened yesterday and I will sail through those shitty injections starting tomorrow. My white cell count was 3 so apparently I cant go down to five injections based on that.

Sons birthday yesterday so he got his mum home safely and we had a takeaway curry which I could taste Hurray for small mercies.

Sbmpp · 06/12/2025 17:37

@cantbelieveIamhere Just finished reading your post and I can’t believe what a reaction you had. So scary and so wonderful that a whole team responds so well. I am blessed to not have that happen to me but I do notice on the first and second day post taxol that my cheeks turn red and hot. I mentioned it to my chemo nurse and she said “oh”???? So when I see my oncologist this month I’ll tell her. How many injections do you have to take? I give myself just three and I’m so bad at it even though I was a nurse for twenty years (when I had to give my self the blood thinners it was 2 shots/twice daily and my stomach was a mass of bruises after three months). I can’t believe you were wrapped in ice (figuratively speaking) for as long as you were. You are one tough lady :).
On a note of happiness and gratitude: my dd, dsil & 2dgc are here visiting from Idaho (we’re in S. Calif). They have flown out here first week of Dec. ever since my diagnosis in 2023. My family keeps me going. Sending love to you all as another member of the family no one wants to be a part of.

Nonamelass · 06/12/2025 17:58

@Sbmpp gosh my face was always red the next day or so too ! Never thought to mention it I just thought it was the cortisone. Yes you’re right it’s best to tell them and I probably should have too . It’s so nice that you have such a loving family, enjoy your time with them

cantbelieveIamhere · 06/12/2025 18:02

@Sbmpp I go red too, am bright red and blotchy right now, it happened last time too, nurse said it was steroids but it has happened both times and maybe its chemo too.

I have been given 7 filgrastrim injections and last time got district nurse to do two and then husband does the rest. I have had a terrible reaction to them they give me nausea and stomach ache and stabbing pains in back and each time the reaction gets worse so i absolutely dread them. Asked if I could have less, lower dose whaterver - no so I am dreading this time tomorrow as I plan to do it later in evening. Even with antihistamine and paracetomol its shit for me anyway.

Nonamelass · 06/12/2025 18:05

@cantbelieveIamhere that sounds like it was a bit scary! Thank goodness your DH got the nurses pronto , they sound like they were brilliant tbf. What a warrior you are for keeping all the cold gear on for so long ( on top of all the rest of course)

dancingwhilstfacingthemusic · 06/12/2025 19:14

@cantbelieveIamhere its grim eh? Sorry if you’ve already had this suggested, but have you tried loratadine an hour or so before the filgrastim. It helped me a bit. I also found that lying on a heated blanket helped with the muscle and bone pains. I played with timing too and think eventually settled on late morning for the jab so I could try to keep moving through the worst of it.

Sbmpp · 06/12/2025 21:28

@cantbelieveIamhere Wow 7!!! I can’t even imagine. I have what I can only describe as “bone pain” after I give my self the shots. It lasts about a week. My palliative care dr gives Percocet (oxycodone and Tylenol). It helps tremendously. I remember when the pharmacist first came to me and he looked me inthe eye and said seriously “you need to take 500 mg of Tylenol for the pain”. (And Claritin).
I just nodded seriously right back (tylenol doesn’t do a thing for me). So I’m so very thankful for my PC doc. I’m thinking that having cancer should mean it’s ok to give pts something a little bit stronger than Tylenol or Advil but what do I know. Also I noticed on a different thread that some are prescribed marijuana but have to pay for it themselves. They pay quite a bit more (at least twice what it costs here). Although pot is legal in some states it isn’t legal federally and so my insurance wouldn’t order it for me.

littlebilliie · 06/12/2025 22:13

Sbmpp · 06/12/2025 21:28

@cantbelieveIamhere Wow 7!!! I can’t even imagine. I have what I can only describe as “bone pain” after I give my self the shots. It lasts about a week. My palliative care dr gives Percocet (oxycodone and Tylenol). It helps tremendously. I remember when the pharmacist first came to me and he looked me inthe eye and said seriously “you need to take 500 mg of Tylenol for the pain”. (And Claritin).
I just nodded seriously right back (tylenol doesn’t do a thing for me). So I’m so very thankful for my PC doc. I’m thinking that having cancer should mean it’s ok to give pts something a little bit stronger than Tylenol or Advil but what do I know. Also I noticed on a different thread that some are prescribed marijuana but have to pay for it themselves. They pay quite a bit more (at least twice what it costs here). Although pot is legal in some states it isn’t legal federally and so my insurance wouldn’t order it for me.

I had this a while a go but couldn’t have painkillers, an electric blanket is the key and you can rest properly

Sbmpp · 06/12/2025 22:53

@littlebilliie Thanks for the reply. I have several heating pads and a heating blanket. No wonder they feel so good.

cannaecookrisotto · 06/12/2025 22:59

Blimey it’s been busy up in here! :)

@cantbelieveIamhere
That sounds frightening but amen for the wise nurse prepped and ready just in case. Can’t believe you managed to cold cap for four and a half hours Grin, what was the ice like on your hair when you’d finished? I have to defrost for a bit before I can remove the cap, I’m imagining you like Elsa off Frozen with full icicles.

Filgrastim - my friend who I’ve met in real life going through the same treatment as me, she really struggled with the Filgrastim, they changed her to Pegfilgrastim which is basically the same but you only have to do one injection and she’s had no aches and pains since! It’s a lot more expensive so they don’t dish it out freely but it sounds like you’re suffering with it, might be worth pushing for this? Have a read up on it but I think you should ask.

I use Loratadine and touch wood, haven’t really had any issues. Now the actual injections don’t register, I’ve found that waiting for my skin to dry completely after using the alcohol rub makes all the difference to whether I feel anything or not. I don’t keep mine in the fridge either, less sting when it’s going in.

@FcukBreastCancer
How is your DD doing now?

@ForestFlowerFairy
How are you? Glad the pregabalin is working for you, I’m not surprised you’re word finding on a combo of chemo AND pregab Grin. I got prescribed pregab a few years back for sciatica and I think I had worse fog on that than I do now!! I remember looking for everyday words and it got to the point I had to come off it, it was really noticeable to me and other people haha!

Writing down all those things for your dog was such a lovely thing to do, although I’m sorry you had to drive her there alone - your DH could have sucked it up a bit to do it together and give you some moral support. Bloody men eh?

@Nonamelass
The icy hands and feet are indeed torture, I threw a very immature tantrum on week 4 or 5 and said no more of this cold shite I’ve had enough! I found it intolerable, like having my hands and feet submersed in icy swamp. I’m getting goosebumps just thinking about it.

@Ventress
How are you? How are your parents settling into their new home?

@Sbmpp
It sounds like you’ve had a rough few years for sure but your family sound amazing, how is the visit going? My family and their support prop me up for sure, as do my two DDs. I’ve said it before but I’d be under my bed refusing to come out if it wasn’t for them needing to be fed and clothed 😂.

I get flushes too, I always thought it was the steroids because it seemed to do it the most when I had post-chemo dex then settles towards the next week.

@littlebilliie
How are you getting along with the tricky side-effects? I might treat myself to an electric blanket because I’m suffering tonight with some neck and back pain.

In my news - nothing exciting! Which is probably a good thing. My mouth is shocking, the taste is Envy revolting and the spicy Difflam mouthwash isn’t doing sweet feck all to help, so if anybody has any tips to help they would be gratefully received. No matter how many times I brush my teeth it’s like I’ve got morning mouth all of the time.

Fatigue is bad this weekend too, I can feel the accumulative effects of the chemo starting to build. Saturdays have always been my worse day each cycle and this is probably the harshest Saturday I’ve had so far. I had to get DH to carry baby fatfat to bed tonight and that’s a first since starting chemo…

My appetite has started to drift the other way too despite the steroids, so either I’m feeling too crabby to eat or my body has just had enough cake and is trying to tell me to stop!

So I’m just lay in bed with a hot chocolate having a scroll with both cats!

Sending peace and waving to all CakeBrew

Nonamelass · 06/12/2025 23:11

@cannaecookrisotto Eugh that taste you get 😡have you tried extra strong mints ? I couldn’t have done it without them . Îd be literally talking to the oncologist with one in my mouth 😂The texture isn’t too harsh either.
I think I’d have theown a tantrum too with the mitts and socks!

Inthebasement · 07/12/2025 00:17

Hi all.

Encouraged by Cannaeccokrisotto’s invitation, I’m sidling in and standing at the back. Haven't yet got confirmation but consultant is very sure I have Lymphoma after a CT three weeks ago. Have had biopsy and PET in the last 10 days and another appt with the consultant late next week, where they should hopefully be able to tell me what I have and which stage its at.

Am hating this waiting time. Have been mostly trying to stay upbeat but it hit me hard for the first time yesterday and I was just a tearful, depressive mess, which I hate, because its just not like me.

I’m so sorry that there are so many people in here, but incredibly grateful that you are sharing your experiences so honestly. Was feeling extremely lonely previous to finding this thread.

cantbelieveIamhere · 07/12/2025 07:29

@Inthebasement welcome, sorry that you are here but it does help to be able to have somewhere to share some tips and have a rant.

When I arrived here everyone said the wait was the worst bit because you just dont know whats going on and its true its awful.

They move to tight deadlines so its good you have your appointment next week and then you will know what the plan is hopefully.
Good luck

FcukBreastCancer · 07/12/2025 08:11

It has been busy here hasn't it. I'm glad the new people have found us, but sorry you are here.

I dont have any news on me until Friday. Then hopefully a few weeks of just waiting for radio and enjoying Christmas.

I've been fuming about situation with dd. I had a text to tell me I needed to discuss her blood results. Yet no appointment for a bloody week. I went in person and asked for a copy, but they wouldn't allow it.

I could phone tomorrow and ask for emergency appt, but she's ok at the moment. Big new bruises faded and rash aswell after a few days rest. It will come back tomorrow I'm sure. She has a planned hospital appointment Tuesday so will try and get them to look up results.

Planning a quiet sunday and weather looks fairly shit.

Inthebasement · 07/12/2025 09:04

Thanks cantbelieveIamhere I’m feeling a bit better today and am working all day which will help take my mind off it a bit. Hope all is going well for you.

Fcukbreastcancer I have similar issues when I have bloods at my drs. Ive now signed up for the NHS app and having them sending results to that, which means I get them a little faster. Is that available for your daughter?

FcukBreastCancer · 07/12/2025 09:17

@Inthebasement unfortunately can't get our results online yet in this backward nation (Wales).

Nonamelass · 07/12/2025 09:34

FcukBreastCancer · 07/12/2025 08:11

It has been busy here hasn't it. I'm glad the new people have found us, but sorry you are here.

I dont have any news on me until Friday. Then hopefully a few weeks of just waiting for radio and enjoying Christmas.

I've been fuming about situation with dd. I had a text to tell me I needed to discuss her blood results. Yet no appointment for a bloody week. I went in person and asked for a copy, but they wouldn't allow it.

I could phone tomorrow and ask for emergency appt, but she's ok at the moment. Big new bruises faded and rash aswell after a few days rest. It will come back tomorrow I'm sure. She has a planned hospital appointment Tuesday so will try and get them to look up results.

Planning a quiet sunday and weather looks fairly shit.

Oh gosh what are they thinking ? Sending you a text and then not giving you an appointment for a week ! Extra worrying ( hopefully for nothing) on top of everything else. At least you’ve got the hospital appointment hopefully they can clarify things a bit.
Very rainy here too !

Nonamelass · 07/12/2025 09:37

FcukBreastCancer · 07/12/2025 09:17

@Inthebasement unfortunately can't get our results online yet in this backward nation (Wales).

I don’t suppose if tell them you are taking her to hospital appointment on Tuesday and you need them for that, they’d print them out ? I’m sure you’ve already tried that)

FcukBreastCancer · 07/12/2025 09:43

I did try that @Nonamelass but thank you.

Nonamelass · 07/12/2025 09:48

@Inthebasement Hi ! I’ m quite new here too. I’m in the waiting for biopsy results section . This is my third potential run in with BC ( over 24 years) . I will be totally over the moon if it’s nothing but with my TTR ( tit track record) I’m being realistic… Last two times I was optimistic so trying a different strategy this time 😉
Nice to meet you but sorry you are here and crossing everything that it turns out to be something and nothing for both of us !

Nonamelass · 07/12/2025 09:51

FcukBreastCancer · 07/12/2025 09:43

I did try that @Nonamelass but thank you.

Unbelievable! Email to GP? ( by pass receptionist) I suppose you’ve already thought of that too…

FcukBreastCancer · 07/12/2025 10:04

I haven't emailed as I think receptionist will pick it up. Have considered it though and still might. Or ring at 8am for same day appointment.
The silly thing is, it could be something really simple. A&E told me there was nothing serious. So why won't they just tell me!

Reception said they can't read results as not medical. Fine.. I can figure it out and dh is a doctor. He can't look up her results as would get in trouble. They are strict on it.

Nonamelass · 07/12/2025 10:15

FcukBreastCancer · 07/12/2025 10:04

I haven't emailed as I think receptionist will pick it up. Have considered it though and still might. Or ring at 8am for same day appointment.
The silly thing is, it could be something really simple. A&E told me there was nothing serious. So why won't they just tell me!

Reception said they can't read results as not medical. Fine.. I can figure it out and dh is a doctor. He can't look up her results as would get in trouble. They are strict on it.

Well hold on to that 💕 A and E told you it’s nothing serious and I’d imagine the surgery would be giving you sn appointment sooner if it was urgent ( I’m in France so it’s different , have spent lots of time looking after mum with dementia in England though )It’s just that you don’t need that extra worry hovering around when your mind could be set at ease. I’d phone tomorrow at 8, just so you can relax. Sending a warm hand hold xx

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